Since DH was diagnosed, I've had some really strange things about dementia presented to me as "fact" by people who knew nothing about dementia. Yesterday, though, I heard one that was new to me, and more or less left me speechless. A member of DH's family was explaining to me all about dementia (like I knew nothing about it), and they said that people with a strong character, people who really fight against the disease, do well for a longer period of time. WHAT? (They also informed me that how someone's behavior changes with dementia depends on what kind of personality they had before.) I couldn't believe that anybody thought that. Fortunately, in a few minutes I was able to speak again, and I explained to them that it was absolutely not true, and what dementia really was.
Other people in DH's family have made comments about how it must be nice not to have to go to work any more—like DH is on a paid vacation via his social security disability! They get angry when DH doesn't want to talk to them on the telephone. I've had some of them ask if he's feeling better now—like you eventually get over dementia and are well again.
How can you get through to people like this? Or would it just be wasted breath even to try? (Can you see why DH doesn't really want to talk to them on the phone, even if he could?)
Oh Jan, how I know those comments! Each time DH would talk with one of his brothers, the brother would end the conversation with, " Well, I hope you are feeling better soon"?????????????????????????????????? Alrightly then.....................
That's strange. I guess they can't think of anything to say, but I've heard a variation where people say things like "how are you feeling, Jeff?" as if he has had the flu or something.
If strong, stubborn and determined can keep a person with dementia from progressing rapidly, Charlie would have started getting better the minute he was diagnosed. Where do people get these ideas?
I'm convinced that the patients who had high powered intellectual jobs hid the early stages from everyone around them much longer than those who weren't being active and weren't reading, etc. It isn't that they didn't progress in their dementias. But a lot of things do slow down the symptoms.
And there is a thread way up near the beginning about how a lot of the symptoms that drive us crazy are heightened versions of things they always did, only worse.
On the other hand a lot of people don't realize that ALL dementias are terminal. There are a few things that act like dementia but aren't dementia, like low thyroid fog, that can be fixed with medications. People need to be told that they aren't getting better. But that is a hard thing to do.
As for where they get these ideas. They get them from stories in the media that are filled with silly errors.
The one that is always like a kick in the gut to me is "I don't want to remember him as he is now". I actually understand the feeling but don't they understand that they are not only rejecting him but also me? I don't want to remember him as he is now but have no choice in the matter. Where is the support for the person with the disease and his spouse? The pain that this kind of remark can cause to the nonaffected partner is so inconsiderate on their part. It may be and probably is a very honest statement but I have had to overcome all of those types of feelings I had for my loved one and be there for him. Okay, I find it frustrating that so many have dropped by the wayside during our journey.
The basic truth is that if one is not personally involved with a particular disease, either as a caregiver or the person with the disease, one has very little knowledge, and even less interest in said disease. It doesn't matter if it's Alzheimer's, diabetes, ALS, Lupus, or anything else.
If it doesn't touch someone personally, they really don't care about it. I am not saying this as an indictment against anyone. It's just the way it is. I have no interest in learning about any disease unless it is affecting someone I know. After 7 years of living with, and learning about Alzheimer's Disease, I have come to realize and accept this fact. It does not stop me from trying to educate people about the disease, particularly health professionals, because misdiagnosis, dismissal of symptoms, and the "you're too young" mantra, takes away quality of life for both caregiver and patient. So I'll keep at it. I consider other's misconceptions a chance for me to educate them.
As for behavior changes, we have read where many of our spouses have gone from quiet, pleasant, never loosing their temper to people who are belligerent, violent, nasty, etc. So they can change - do a 180.
I have read reports that highly intelligent people, high achievers, avid readers, etc. often will progress faster. That may be as Starling spoke of: they hid it longer.
All we can conclude from all the people here: we don't know how they will progress, the personality changes they may have from their norm until the time comes.
In the beginning I tried to explain to friends that he got almost all his facts totally mixed up, so don't put much stock in the stories he's telling, just be patient. They all treated me as if I was imagining things and couldn't even look me in the eye after I'd explained his confusion. Because they didn't see it!!! It wasn't until the meltdowns started happening that they finally realized the dementia wasn't just an obnoxious personality in action. DH is the sweetest guy in the world and when he isn't being nice it's the disease, not him.
What should people say? I hope your spouse is over this soon. I think it is a very difficult topic. They want to show support, but the only way out is death. What would you like to hear from them instead of I hope they get well soon.
moorsb-- I think the main thing I would appreciate the most would be a simple acknlowledgement of what they've been informed the situation is. It is frustrating and hurtful to have someone negate what they've been told, or even worse argue about it. A simple, "I'm sorry to hear it." Even better, add "How can I help?" The only way out is death, but there's still the time from here to then, when they can be supportive of me and patient with DH. They could come for coffee. Depending on our LOs situation they could go for a walk with him; take her to lunch; visit while the Caregiver has a Dr. appt. Any of that would be better than telling me, "You have to make him do . . . " "He's lived here all his life. He won't get lost" "You have to give him this health supplement or that treatment." Better yet, "You have to take him off all those drugs. They're poisons to the system." My response to the last is that we're doing what's best or DH with his Dr.'s guidance.
I understand what you are saying. Let's be realistic in our expectations. I have the same frustrations with what people say. But I have never offered to take care of someone who I did not know, was not family and have no concept of what they are dealing with. I have my own problems and thou it may be a nice gesture, I have found it rarely happens. DW has a friend who says that she want to take her out and get her hair cut or take her to lunch or come over for a visit. It is just someone who understands but lacks the will power to follow thru. I do not blame her I know that I would be very unlikely to do this for someone else. The truth.
Lynn is one of those who did a total 180. He went from gentle lamb to Alzheimer's devil. He did not have any of these "personality traits" before. He had no control over his actions, any more than he had control over losing his memory. accck it makes me so frustrated when I hear these kinds of things.
Therrja, I hear this all the time!! Even his own children rarely go to see him. I don't think they do understand that we feel rejected too. It is as if because you are the spouse you are the one who is suppose to be the strongest. Why doesn't anyone see that because I am the spouse, it is effecting me the most? I too understand how hard it is to see someone you love this way, but I agree with you.. it is like a slap to my face everytime someone says it. *sigh
People don't realize that this horrible thing we call AD, (with good days and bad days), is terminal. My AD Spouse is dying, one miserable brain cell at a time... And I have to smile and pretend I'm not noticing...
Now I believe my husband has had FTD for way longer than we knew. I saw changes in his behavior, especially anger at such little things, but I never once thought it could be dementia. But, since I know that most people don't know what FTD is, and I say he has dementia, some of them think that means he is insane! One person wrote me a note after I let her know what has happened to him and she said she couldn't believe he had this because he always kept his brain going, constantly going to school, working on his PhD, and thought that because of this he couldn't get dementia! One of my neighbors is afraid, I think, to have his kids around him. Most of the people we know have been kind, but some have totally forgotten about us. There are no e-mails, notes, cards, phone calls, nada. One was a close friend. I simply don't understand it. And, I've noticed that some people don't even want to talk about my husband's illness to me. It's like they don't know, or care, what I'm going through. Not one person (no, that isn't true; there are some) will ask how I'm doing. I'm going through this as well as my husband. The idea of another 7 or 8 years of this is frightening, especially if I have to put him in a NH. I worry how long our money will last when and if that happens. I'm extremely afraid what's down the road. I do understand it might be hard for them to talk about it, they don't know what to say. But, say something, even if it's just a few words, just to show you care about him, and me.
moorsb--you mentioned that your wife has a friend who has offered help but hasn't followed through. One mistake I made early on--I received offers of help (generally vague) and didn't take advantage of them. Now I realize, when someone says "is there anything I can do to help?" I should have whipped out my calendar on the spot and locked in a day and time--could figure out the details later. My problem was, when put on the spot by someone, I was so overwhelmed in the early stage, I would just say thanks and let it go. Maybe if I had taken this approach early on when the dx was fresh, it would have started a pattern that would have continued. Now, 5 years later, there are very few offers--my "help" is in the form of services I pay for (aide and daycare).
Maybe you should say Oh, they are not sick, they will not get well, they are dying . It will just take a few years for the mind to decay to the point where they can not remember how to swallow.
moorsb--That's been a temptation at times with certain people. I can roll off the erroneous comments from those who have no real consequence in our lives. It's the "near and dear" with the stopped up ears who spew from their mouths that which they know nothing about and care not to learn, that fry my cookies.
As to what MarilyninMD said. I'm trying to find ways to tell caregivers and those who offer hep, ways to make that work better. As caregivers, we need to accept every stitch and bit of help we possibly can. We can help the process, as Marikln said--schedule something. Alo keep a Do List so whyen the offer is made., you can say, "?Thyis is a list of things I could use help with. SZee if there';s something you'd be able to do."
As a person offering, be specific. "I can mow your lawn every other week." or make note to yourself, whenever you're making a store run, call and offer to pick up anything the Caregiver might be needing.
And lastly, if you picture all the jobs of being a parttner in a household as servings on a plate, as we caregive, we have our original plate, take on the plate of Caregiver jobs, and eventually take on the plate our LO had. Anything, anyone can take off any one of the 3 plates is helping. Help does not have to be specifically geared to dealing with the LO. Any help is fair to give and fair to ask for or receive.
If, as a Caregiver, you are uncomfortable asking for or receiving help--get over it. One of the best gifts you can give someone is to be sincerely grateful for their caring enough to help you and letting them know their gift is valuable to you.
I have scheduled a family meeting to go over all the issues I need help with, so thanks all for this thread as these issues are always on my mind and it is high time I take a shot and see if the family can help me out.
Carosi.... Fry my cookies! Lol! That made my day. Thanks
Hello all, I have just finished reading this blog and I can say that everybody is right. My first wife had Hodgkins Disease and people were the same then as they are now with Kathryn having Alzheimer's Disease. There is no differance at aall. I think they all mean well but they don't know what to say. They don't mean to be hurtful. I agree with moorsb a lot in what he says and I understand what everybody else is saying too. I think they really do want to help but are also hoping at the same time that you will not ask them to. It is called being human I think and we have all been quilty of it at one time or another. It is just that this time it hurts more.
If kathryn is with me I do not talk about Alzheimer's at all because it up sets her and makes the rest of the day bad for both of us.
If kathryn isn't with me I take the time to give them a short education about Alzheimer's and explain to them that it can strike anyone at any time or age while at the same time assuring them we are coping with it and still enjoying life to the best of our ability and thank them for their interest and concern. I also tell them I will let kathryn know they asked aabout her and if they are ever in the area to feel free to stop for a short visit.
When someone says I hope your spouse is over this soon. I think what they really mean is that they are wishing you and your Loved One the very best.
I think if we really let it bother us too much it will make our lives worse. I just smile and say Thank You.
It's true that it's hard to learn to ask for help and to accept it. I am blessed with a very good friend who constantly asks me what she and her husband can do to help. I have explained that companionship and simply doing things together as a foursome regularly is so important, and so they do try to make time in their busy schedule (lots of grandchildren and other commitments) to get together every week. Just now I found a email inviting us for drinks and dinner tomorrow after daycare (I've told her how restless DH often is at the end of the day, wanting to go "home"). Yet I am always hestitant to ask for the help I know they (and also dh's brother and SIL) are really willing to give. I know that they too are mourning the loss of their friend (and brother).
I've become a little better at asking strangers for help. At the airport last week I asked a security agent to help me explain to DH that he really had to take off his shoes to go through security. She was happy to do it and it helped.
Oh, the bike. It's getting harder -- he can ride just fine and is OK in traffic when I'm with him but the problem is that he always wants to go the wrong way. We'll be riding home after (for instance) a meal in a restaurant -- one of our usual locations -- and all of a sudden he'll say "No, I want to go home" and turn around to go in the opposite directions. A couple of times I had a dickens of a time getting him home. And I have to keep his bike chained now because he wants to "go find Jeanette" at all hours of the day and night.
My patience, with people like those who opine how nice it must be to be on a Mini vacation, living on SS Disability, burns my last raw Irish nerve. For anyone to make such a thoughtless, uneducated remark is simply beyond the pale. My retort, since I don't suffer fools well at all, would be on the sarcastic side.. " Why yes, I can't tell you what an absolute delight it is to be on this mini vacation. I'll send you a postcard next time I have to change depends, mop the floor, call the police to help find my LO who has wandered etc. Ah Yes, this is the most wonderful mini vacation one could hope for..to watch my LO slip away day by day until (s)he takes that last breath. Obviously, you do not know that this mini vacation ends in death". I would be just that blunt. If these kinds of people depart from my sphere so be it. When people ask questions about the disease because they really do want to understand what it is and all that is involved, I am happy to teach them. These are the ones, mainly I have found, who are willing to come to the rescue and volunteer to help and mean it.